How To Make Policies Work for Black Women With Disabilities

Authors’ note: The disability community is rapidly evolving to use identity-first language in place of person-first language. This is because it views disability as being a core component of identity, much like race and gender. Some members of the community, such as people with intellectual and developmental disabilities, prefer person-first language. In this column, the terms are used interchangeably.

This column is part of a series of editorial products that focuses on the most underexplored barriers to economic security, civil rights, and health outcomes facing Black disabled women and girls. The pieces highlight consistent themes and advance policy solutions to continue the discussion and level the playing field for Black disabled women and girls.

Poet Audre Lorde, commenting on her various identities as a Black woman, a lesbian, and a mother, said, “There is no such thing as a single-issue struggle because we do not live single-issue lives.” When it comes to policymaking, centering intersectional identities is the most effective way to uplift the most marginalized members of society, resist efforts to compartmentalize experiences, and engage collective action.

The Disability Justice Initiative at the Center for American Progress, recognizing that policy is personal and that therefore it’s imperative for policymakers to engage with those people whom policy affects the most and those community members who are most marginalized, recently convened a series of roundtables and individual discussions with Black disabled women to learn about their experiences with economic security, civil rights, and health policies. This column shares some of those experiences to provide a glimpse of the unique daily challenges and barriers that Black disabled women and girls face.

Lived experiences of Black women and girls with disabilities

According to the Centers for Disease Control and Prevention (CDC), disability affects 1 in 4 Black people in the United States. However, getting a clear picture of what it’s like to live with a disability or as a person of color can be difficult due in large part to the fact that data collection on these issues is limited and inconsistent. The data that are available show African Americans are “more likely to have a disability than white people, as well as that the disability appears to have greater impacts on them. Both Black people and disabled people face barriers to education and employment that limit their earning potential. According to the National Disability Institute, “people with disabilities are twice as likely to live in poverty than people without disabilities.” And nearly 40 percent of African Americans with disabilities live in poverty. Even after adjusting for education levels, disabled African Americans are more likely to live in poverty than other people with disabilities.

An estimated 3.5 million Black women have a disability, but research at this intersection is often ignored. People at the intersection of identities such as race and disability often find themselves left out of the conversation when only one dimension of their identity is discussed.

Eman Rimawi-Doster, 37, lives in New York City, where she works as an Access-A-Ride campaign coordinator and organizer. She identifies as a mixed Black Palestinian woman and an amputee diagnosed with lupus, and she recognizes that her Blackness and her disability intersect. “Whether it’s health care, housing, employment, transportation … it’s all connected. I’m still Black, I’m still a woman, I’m still Palestinian, and I’m still disabled.”

Likewise, Heather Watkins, 48, understands the importance of being seen in all her dimensions. A resident of Boston, Massachusetts, Watkins was born with muscular dystrophy and identifies as a disability advocate; an author, a blogger, and a mother; and a graduate of Emerson College. As an advocate who works in her community to increase accessibility, she voiced sentiments similar to Rimawi-Doster’s in highlighting the significance of intersectionality: “If you redact any part of that bio, you reduce the community visibility and the contribution.”

Rimawi-Doster and Watkins shared brief snapshots of their experiences during individual virtual interviews with the author in May, speaking about their lived experiences as Black disabled women and offering recommendations for how to create equitable systems. The interviews touched on topics related to economic security and the barriers that exist for disabled people in education, public safety, housing, employment, health care, and more.

Rimawi-Doster knows her skin tone and metal legs are the first things people notice. She also knows her fierce self-confidence cannot counter the racism, sexism, and ableism—discrimination and prejudice rooted in stereotypes that people with disabilities are less than or need to be somehow fixed—that she faces when it comes to her employment, education, or housing—and even her ability to marry. One of her major challenges—which many disabled people share—revolves around Social Security Disability Insurance (SSDI). Rimawi-Doster, who previously received SSDI, recounted the struggles she experienced when trying to balance obtaining services and securing employment. She said that the incorrect but “default thinking” for many Americans is that disabled people automatically receive state money—that, indeed, she only began receiving SSDI because she was “completely incapacitated with chemo and dialysis.” When the Social Security Administration later deemed her capable of working and reduced her benefits, she struggled to get a job because of the gaps on her resume due to her health issues—and because employers can discriminate against people with disabilities. Of those who do manage to get jobs, Rimawi-Doster said, “if you make too much money according to the state or Medicare, you are at risk of losing your insurance.” This experience demonstrates that benefits are much harder to get than people think—and very difficult to keep.

Rimawi-Doster’s fight with ableism hasn’t been exclusive to employment. When she was in college, the administration denied her accommodations because they didn’t think her lupus was “a big deal” even when she provided appropriate medical documentation. And while she has health insurance, health care and medical bills are a real concern for her, as they are for many people with disabilities. Rimawi-Doster once chose not to take lifesaving medication when she couldn’t afford the $1,000 shots for blood-clotting treatment. “A lot of people don’t know how much work it is to figure out how to pay for medical bills, equipment, and other tools with insurance, and be able to meet their rent, food, and transportation needs,” said Rimawi-Doster. She even had to rethink marrying her now-fiancé because she would lose her Medicaid. Only once Rimawi-Doster had a job, gained some financial stability, and got off Medicaid could she and her partner start planning their wedding.

Heather Watkins believes that most people have a fixed idea of what disability looks like because there are few comprehensive depictions. Watkins wants people to know that parents with disabilities exist; they go to the park with their kids and attend PTA meetings. As a proud disabled mother, Watkins said that “one can be in need of care, be a caregiver, and a community builder, all at once. Many disabled Black women exist in that continuum.”

As a Black mother with muscular dystrophy, Watkins has negotiated the family law system while knowing it often does not favor parents with disabilities. She has also had to navigate the medical system as a parent, caregiver, and patient. Once while visiting the doctor, she was denied a full exam because the office did not have a hydraulic table. It was only because of her complaint that the office purchased an accessible table and she received a full exam. She noted during the interview that someone else in her position may have simply given up and not gone back to that office.

These sorts of situations are often traumatic for people with disabilities, including people of color. Watkins said that the struggle is daunting; she confided that she often asks herself whether she has the energy to fight the system on any given day to simply live her life. She said that because of the lack of accessibility and inclusion in most places, “people with disabilities have to think two and three times as much,” and consistently, about whether buildings and services are accessible. Watkins needs to consider whether a place has automatic doors. Rimawi-Doster must think about whether a place has ramp access. Many people with disabilities have to think about transportation—if a ride-share will pick them up or if an elevator is broken in the metro stop—before even leaving their house. They must plan their route to and from places they need to go to ensure that the journey is accessible.

In addition to this emotional toll, disabled people frequently encounter added financial costs of their disability. As Watkins put it, “When you don’t have economic stability, it impacts your choices and decisions, and your quality of choices.” These financial burdens can include steep costs for personal care attendants, the upkeep of accommodations and mobility tools, and out-of-pocket medical care.

Conclusion

Engaging in an intersectional approach to policymaking does not sideline a single identity or oppression. Instead, it allows all who experience that identity to benefit. The lack of quantitative data makes it difficult to develop policies and pass legislation that directly address the barriers faced by Black disabled women. In order to ensure that Black women and girls with disabilities are included in and benefit from policy decisions, more data and research needs to center them and their lived experiences. This work from CAP’s Disability Justice Initiative aims to further those conversations.

Megan Buckles is a senior policy analyst for the Disability Justice Initiative at the Center for American Progress.